Headaches with GCA

[Caulkhead63]

Do you get headaches anywhere in your head or just in a certain place? And painkillers don't work.

[SnazzyD]

I had a burning in my scalp, especially on one side and the side of my face didn’t like cold air. The temple was tender but not agony and I wouldn’t say it felt like a normal headache either. My first pains were at the base of my skull and a niggly neck muscle that came and went but worse in the mornings. My jaw ached when chewed and I had a dry, almost but not quite sore throat.

Why? Are you worried?

[Caulkhead63 in reply to SnazzyD]

Pain in my forehead and top of my head. Ache down left side of my jaw but can chew ok. As I said painkillers don't work

[SnazzyD in reply to Caulkhead63]

Do get it checked! But also see if this about the sternokleidomastoid muscles rings any bells because they can cause all sorts of GCA-like symptoms.

healthline.com/health/stern...

youtu.be/_BGczs_axTg?featur...(Not working as expected?)

[Caulkhead63 in reply to SnazzyD]

Thank you 👍

[SheffieldJane in reply to SnazzyD]

I like this! Thank you Snazzy.

[Stella3 in reply to Caulkhead63]

You should up your dose of steroids. Your rheumatologist should recommend that for you.

[Caulkhead63 in reply to Stella3]

I don't have one. My care from my doctor has been non existent. I've had to chase up blood pressure appointments only to be questioned by the receptionist has the doctor asked for this! I haven't seen a doctor face to face since last October! Even phone calls I've had to book but haven't had one of those since June. My chap from Specsavers refurfed me to eye doctor end of may because my catricks are worse 6 months today I am still waiting! Can I put a complaint in?

[DorsetLady PMRGCAuk volunteer]

You can get them anywhere in head -depending on what arteries are affected -it’s a bit random -see this picture -

Head arteries

[Caulkhead63 in reply to DorsetLady]

Oh golly!

[SheffieldJane in reply to DorsetLady]

I feel a bit pathetic asking this but I have had a painful neck extending into the base of my skull for a couple of months. I have a tightness in my scalp. All this is helped by head massages by my husband - his post retirement career I think, he’s a natural.

I saw a physiotherapist about it, who wasn’t really much help at all - no curiosity. I have cervical Spondylosis which I put it all down to. Also checking my iPad in the wee small hours ( my Australia based daughters are often there, but I am lying in bed, bad posture) Painkillers don’t touch it.

I have no other cranial GCA symptoms unless you count sore gritty eyes. Am I being negligent not reporting this to Sarah Mackie. I imagine the only solution would be a higher dose of Pred. Or an X Ray.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Not pathetic at all -but if helped by massage think it’s unlikely to be GCA. I couldn’t bear to have my head touched -and even now the thought of it being massaged at that time has me running for the hills!

Sore, gritty eyes -are probably just that -I get bouts of if -and winter, being indoors with central heating drying the air is a common cause.. I know you already use drops and heat pads -just do it more often (advice from my optometrist!)

I think you are right is going for your cervical Spondylosis -but always with mentioning to SM -if only for your peace of mind… 🌸

[SheffieldJane in reply to DorsetLady]

Very reassuring, thank you DorsetLady 🌺!

My eyes have become a chronic condition, strict hygiene and drops, or swollen lids, styes, discharge, blood shot. It is such a nuisance. Nasal congestion also and always threat of infection. My suitcase is full of drugs, supplements and remedies for minor bothersome things.x

[PMRpro Ambassador in reply to SheffieldJane]

I agree that if massage helps, it is more likely to be a tight muscle problem. Bowen therapy helped me loads in the UK and here the physios occasionally stretch my neck and that is blissful! The Pain Clinic does needling for tight shoulder and neck muscles - not what I'd call bliss but very helpful!

[SheffieldJane in reply to PMRpro]

Thank you for this. After Australia I am going to address all of this. One of my daughters has a rather magical osteopath who looks like a wizard with a long white beard. I think I will try him again.

[Hunter134 in reply to SheffieldJane]

Have a great trip!!! I bet your family will make you feel better once you arrive💖♥️

[SheffieldJane in reply to Hunter134]

Thanks Hunter134, I am sure you are right! X

[Blackcat1M in reply to SheffieldJane]

Enjoy your trip and take care 🌼

[PMRpro Ambassador in reply to SheffieldJane]

Definitely sounds worth a whirl!!!

[Telian in reply to SheffieldJane]

I agree with DL and Pro if head massage helps it wouldn’t be GCA. I couldn’t bear anything touching my head. I couldn’t even lie down in my bed. Headache like no other. Your symptoms need further investigation I would say. Worth mentioning to SM if only for elimination of GCA and pointing you, hopefully, in the right direction. Hope you’re holiday helps you relax. 🌺

[SheffieldJane in reply to Telian]

Thanks Telian. I have free floating anxiety at present, it is latching on to everything pre- flight. I will be ok when we are in the air.

[Telian in reply to SheffieldJane]

I like the ‘free floating’ explanation of anxiety. It fits perfectly with me as I ‘float’ from one issue to another in my head. I’m even looking for excuses not to go to my Brother’s interment of ashes next week (we’ve had the funeral). I find sharing my fears help. So needless to say I will be going.

I totally understand you as I am the same. I’m blaming my current dose (5.25). Wasn’t like this first time around only on very high doses. As you say once you’re on your way you’ll be okay. I love flying.

[SheffieldJane in reply to Telian]

Thank you Telian. I am sorry that you lost your brother. Of course you will go to the internment of his ashes. It’s just that we keep being confronted by the finality of our own mortality. I do anyway. My daughter’s father in law’s funeral was rather lovely. His children spoke and sang and played music - a lovely legacy and reminder of what it’s all about.

[Telian in reply to SheffieldJane]

Thank you SJ. It is all I think about too lately. I’m the eldest and lost two in just over two years. It’s still surreal. My brother was talking and laughing and just slumped back. Inconclusive as to why so to wait 10 weeks for further results. 🌺

[SnazzyD in reply to SheffieldJane]

My poor husband was a real soldier with trying to massage my GCA neck/head symptoms away. Did absolutely nothing.

If I have bad neck muscles the ones that join my head to my shoulders particularly, painkillers don’t tend to work. Might take the edge off it but unless I deal with the abuse they are getting it keeps going. One thing that characterised my GCA head/neck pain was that it was worst in the night and mornings and amount of pillow changes worked.

[Susan1705]

I started with pain in my neck just on the left side, so not my usual PMR symptoms. The worse pain was in my face and I actually went to the dentist as I thought I had a gum infection, which was not the case. I also couldn't wear my glasses as the side of my head hurt and my scalp tingled. I also started to get blurred vision, at which point I went to the walk in clinic at my GP and was sent straight to hospital.

[AtopicGuy]

This paper concludes that, EXCEPT IN PATIENTS AT HIGH RISK OF GASTROINTESTINAL BLEEDING, aspirin is useful alongside steroids, because it aids blood flow. When I get a severe, persistent headache, I take a large, single dose of dispersible aspirin, if possible with a meal. It was recommended to me by a doctor when I had painless visual distortions (which did not develop into a stroke); I was in my 40s at the time. 500 to 750mg is quite normal. To my surprise, 1000mg temporarily reduced the stiffness in my shoulders, too. I stress: I NEVER REPEAT THE DOSE.

ncbi.nlm.nih.gov/pmc/articl...

[Groda]

I have GCA since June/2023. The first sign that something was wrong was when I felt like I had been stung or pierced with shart object on each side of the top of my head, stung in each temple and stung on each side under my chin. Very tender to touch any of those places. What is interesting is that this happened 4 days aftr cataract surgery. Another post a couple of days ago also mentioned getting CGA symptoms 4 days after cataract. Wonder if there could be a connection.

Groda

[PMRpro Ambassador in reply to Groda]

Only in that it is a stressful experience that may have been enough to take the immune system over the threshold into becoming so stressed it went haywire.

[Carver63]

yes headaches in the TA and skull from the beginning of first flare 42 months ago. last 18 mos drug free but headaches continue. numbing ache in right side of head like a swelling. some relief from medication but when large flare occur nothing works. have investigation into potential sinus infection and neurology review for migraine type headache. IT has been pretty much constant. nice exception has been relief when in warmer more humid coastal areas. Go figure i have to live in dry cold high plains of Alberta